Brain Aneurysm Support Community

When does it end?

June 2, 2019 marked 11 years since I had my SAH ruptured brain aneurysm. June 2, 2008 was the day that changed my life forever. I was getting ready for work and got into the shower. The next thing I know I was woke up in the hospital three weeks later from a coma. A nurse came in and told me that I had a ruptured aneurysm. The surgeon was able to clip it and they put an IVC filter in me as well as a PEG tube. I was in shock and had so many questions but couldn’t talk because there was a trach in my throat due to some other complications that arose. I didn’t know anything about aneurysms, or what to expect. She told me that I was lucky to be alive because most people don’t make it.
Right from the start I started noticing changes. It’s as if I woke up and I wasn’t me anymore. When I saw myself in the mirror for the first time I was horrified. I has stitches and staples from ear to ear from the surgery and the front of my head was shaved.Some of the changes were subtle and others were very obvious. The headaches were the worst. They told me I would probably get better but it would take a while, and that I should take time to recuperate and probably file for SSDI. My main concern was getting out of the hospital, and getting my life back to normal. It was not as easy as I thought it’d be.
I flew up to Pennsylvania to be around family until I felt well enough to go back home to Florida. After about a month, I started doing some home remodel jobs with my brother, which in hindsight was a mistake. I wasn’t the same person I was before. I got so frustrated and more depressed seeing that I was unable to basic things I’ve done all my life. My thinking was different. I couldn’t concentrate anymore. I felt drained all the time both mentally and physically. I kept forgetting things all the time. I started getting panic attacks, and there were a few other issues that I noticed. After about three months I flew back down to Florida. I didn’t want to be around my family while I was dealing with all these issues. Moving back to Florida didn’t help. I was still dealing with the same problem, just in a different place, but by myself. I couldn’t understand what I was going through, or why I was going through it. Nobody told me what to expect after the aneurysm and nothing made sense. The more I tried, the more depressed and frustrated I’d get. I felt like I was failing at life. As if I was just existing, not living. It got to the point where someone told me I needed help. I didn’t know where to get help. I tried to deal with everything myself, and tried to hide it from everyone, but some things you just can’t hide. Then I went through a traumatic experience and finally went to a counselor. It doesn’t help with the headaches, or any of the other issues I deal with, but it is a start. Eleven years later…when does it end?

So glad you found a counselor to help light the path forward. My aneurysm was in 1995. Like you, I think I just wanted things to go back to the way things had always been. It didn’t work out that way. The two words that stand out to me are “acceptance” and “patience”. I had to accept that this was a life changing event that would fundamentally change who I was and what I was able to do. Acceptance is a gradual process and remains something I have to work at. The seizures, the headaches, the anxiety and being overwhelmed by stimuli like noise and chaos. The cognitive changes and difficulty learning are the most disturbing. But I can’t go back to the hour before the aneurysm happened and prevent it. Acceptance. Then, I work at patience with learning new things. It takes me longer and sometimes I try but just can’t do it. I have to focus on gratitude that I survived and have the chance to have great days like walking on the side of a lake in the sunshine to a dinner with friends, and not to focus on what might have been or what I might have achieved. Then, to answer your question “when does it end?” I think for me I know that I’m not going back to the past before the aneurysm, but going forward with the new me. I am still working on acceptance and patience. I have to be grateful that my life didn’t end, but it makes me sad and mad sometimes too. Wishing you both acceptance and patience! Welcome to the group of survivors!

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Are there better days without headeches ? It’s very discouraging , when you are not feeling well it’s hard to enjoy anything , just struggle and fight …are you taking any preventive from headeches medicine ? Regarding psichological issues , may be it should be not big expectations but small steps , small achievements… for example I feel very overwhelmed with daily tasks and errunds . And never complete what I plan because I always feel super tired, My friend told me : plan one thing a day but complete it - if was helpful advice . For cognitive skills the art and music helps a lot improving ability to focus and concentrate .

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Headaches have diminished for me. For me getting a good nights sleep makes a big difference. Being well hydrated helps. I’m very sensitive to light so the room must be dark. I often take a single Tylenol before bed which seems to help. Early on, I slept in a recliner. Mine is skull pain, where the muscles and bones were cut, twice in 2 procedures. It’s like arthritis after breaking a bone. Your friends advice about prioritizing one task is good. I hope you are talking to your docs about severe headaches. Yours seem worse than mine.

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I used to have severe headaches. But eating enough protein and staying hydrated have been my two best friends and I rarely get them now. I’m still relearning how to do things I used to do frequently. I write reminders down, usually keeping them in my phone. I use the calendar daily to know what day and year it is and what is important to do that day. Get to a neurologist and stay with your therapist. Perhaps a support group exists in your area. If you can’t find one specifically for brain aneurysms, try stroke or TBI support groups.

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Hey John,
Firstly, welcome to the community, that is even if most of us would much rather not be here at all. But the reality is we are here and we all have to deal with it from this point forward.
When does it end? Well that’s a 'How long is a piece of string?" sort of question. For some people the impact can be minimal and yet for others the impact can be catastrophic, It seems that 2 people can have exactly the same type of annie, requiring the same surgery but have vastly differing outcomes. Trying to compare one individual’s situation to another is near on impossible. Even in my own situation where I have undergone a few neurosurgeries, none have been exactly the same. My initial operation I recovered fairly well from and returned to my profession. I tried to take the same approach for the other surgeries but the outcome has been far less than satisfactory.

I have to agree with the comments made by both Kate and gk “…two words that stand out to me are “acceptance” and “patience”…”

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Over the years I’ve learned a lot about acceptance and patience. First of all I had to accept the fact that I didn’t have much patience. LOL. After my surgery, I was never told how much my life would change, or what to expect. I never knew what obstacles I would be facing. Through the years I’ve been dealing with a lot of different issues but I never knew why. Things I’ve done all my life, I was now unable to do. It was so frustrating. I couldn’t understand what I was going through, or why I was going through it.
I figured that if I could at least hold a job, my life would have some form of normalcy to it. It was a daily struggle just trying to make it through the day, though some days were better than others. I felt isolated and alone. There was no one I could really talk to. How do you explain to people what you are going through when you don’t understand it yourself? As time went by, things seem to get worse. Then I got hurt and was physically unable to work.
Through the years, there were many things I had to learn to accept. First of all, I had to accept the fact that I have limitations, and there are many things that I won’t be able to do anymore. Patience…I’m still working on that.

All this time I thought I was alone and that no one else would ever understand what I was going through. The other day I found this site and stared reading some of the stories. I then realized there are people out there that I can relate to.

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You made me laugh out loud! I too work at accepting that i don’t have patience! Too funny. Glad you found the group!

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Oh John,
I cried reading your post. Your frustrations are my frustrations.
I won’t go into everything we have in common…because you live it too.

There have been a few things that have helped me.
I went to see a neuropsychologist. I took a cognitive test to see what and where my deficiencies are. Then she explained what everything meant and how it affected me. That test really helped with me getting my long term disability claim approved.
I also found a great pain neurologist. Not just a pain dr. There’s a big difference. I moved away from my neurologist and I travel back to see him.
My PCP put me on an antidepressant because chronic pain can cause depression. I’ve never been depressed and I’ve never experienced pain like this before either…so I take the antidepressant. I saw a psychiatrist who specializes in TBIs, geriatric brain funtions…that sort of thing to find the right antidepressant. Because…they are not all the same!! (I’m not a geriatric person, but my brain leans that way)
I found a good therapist.
Lastly, I had to change my attitude. Every year, when the anniversary of my rupture got closer…I’d start having anxiety attacks. These started about a month before the day of my anniversary. Well, my therapist said, instead of handling it that way…why not celebrate your survival?? So I did! We’ve been having a survival party ever since. That small action started turning my thinking around.
I now live for each good moment, day, couple of days, etc. It’s not easy.
I still have my pity parties!! I still cry when the pain is to the point I can’t function and nothing helps. And it’s the knowledge that nothing helps that scares me the most. And I’ve tried everything. Before I found the pain neurologist…I tried everything under the sun to help with the pain. And…here we are.
John, I will keep you in my thoughts. You’re not alone. I know that doesn’t really help you find your answer…I don’t know if it will end. I just know I have to make my way in this world the best way I can. When I was able to work…I was the best at my job. Or I tried to be. When I played sports…the same. I wanted to be the best. And this aneurysm/s…stripped all of that from me. So…what can one do??
Sorry, I’ve rambled on…impulse control…that’s gone too!!
I’ll be thinking of you,
Mary

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For the last eleven years I had a lot of frustration. I’ve dealt with everything myself. Not understanding what I was going through, or why I was going through it was one of the hardest things to deal with. Prior to my rupture, I only knew of one other person who had one. When he came out of the coma, he was not the same. He couldn’t walk or talk, and had a blank stare. He eventually died a short time after. That experience was my only knowledge of aneurysms. So when I came out of my coma and they told me that I had a ruptured brain aneurysm, a fear came over me. After a while I learned that every aneurysm is different, and affects everyone differently.
As I was going through everything, I never knew there was help. I was going through my everyday trying to adapt, and pretending everything was ok, though on the inside I was falling apart. There was no one to talk to about it. No one would have understood it, or they would have just thought I was crazy. The first few years were the hardest. I could clearly remember the person I was prior to the rupture, and it took time to realize I wasn’t that person anymore, and may never be again. It also took time to accept and try to understand the “new me,” which still to this day, I’m still trying to understand. I still get headaches, ( but nothing like the ones I would get the first few years). I get panic attacks. It’s hard for me to concentrate or remember things. There are a few other things I deal with too, but I keep trying.
You mentioned that you had to change your attitude. Perspective, or the way you look at things plays an important part. A few years ago I had to go from the “why is this happening to me” mindset, to the “how am I going to overcome this and regain peace of mind” thinking. It’s all in how you look at things. I’m glad you have survival parties now instead of anxiety attacks. I’m so glad I found this site the other day. As I said, for years I’ve dealt with my issues on my own. Keeping it all inside, because there wasn’t anyone to talk to who would understand. Eleven years later and I finally find people I can relate to. People who truly understand what I’m going through…because they’re are going through it too.

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This thread has been tremendously useful to me. From the day after the surgery, my goal became ‘getting back to who/where I was.’ I have not had obvious physical changes, and I was pressed to go back to work soon after The craniotomy and double clipping of a berry aneurysm. Nevertheless, my mind has never been the same. Understanding new ideas is still fairly easy, retention is my problem. By repetition, I create new synapses but it takes time and I have worked at it continually for the past 25 years. Christmas will be the 26th ‘anniversary’ of the emergency surgery, and until I read the postings in this thread, I didn’t know I was allowed to relax and accept until I read your posts just now. Thank you, more than I can say. I wish everyone the best. I am so blessed to have found this group.

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Wow 26 years! I’m impressed. Can’t wait for all your tidbits on what has helped over the decades!

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One thing that I discovered was that repetition definitely helps create new memory paths. often I have found that they will suddenly connect with other thought patterns…like an AHA! moment. Games that require developing one or two responses are great. Lumosity is superb. You are not playing against anyone else, you are just working with yourself to improve visual and mental acuity. If you are able, yoga is great because it is also noncompetitive. It helps with flexibility and core strength. I would be grateful to anyone who wishes to share their ideas and techniques.

When does it end … this question was on my mind last couple days … last 4 days - 3 sleepless nights , days filled with headeches last night couldn’t sleep because of bad toothache ( root canal infection ) …I was already exhausted from previous luck of sleep and today I am terrible , like a kid with tantrum . Better not to talk to me . Morning tried to figure out where to go - regular dentist or try to schedule specialist , then went to work… needed to shorten my hrs . Finally wonderful relief - big doze of ibuprofen , i feel human again … sorry , forum for my complaints .

Regarding games , if someone can find , I love Halma , it’s a little bit close to Chinese checkers , but bigger field .one of my favorite games from childhood .

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I love this site too, it helps me to understand I am not alone or going crazy, it took approx 4 years to accept the new me. My problem is my daughter’s and hubby don’t understand that it is different now,the anxieties ,forgetfulness, brain fog,loud noises and the other little annoyances stem from a 9 hour crainiotomy,I feel like they think I am making it up or I shouldn’t go on the internet because I’m imagining this cause I read it, I know they don’t mean it in a bad way,not sure if they just can’t accept it so it’s easier to think I’m imagining it. Is there someplace that I could get a print out that informs family members in quick point format with all the post surgery of things that may or do happen to change for us to give to them so they can see I’m not imaging this or if someone is really good at making this for us, I am sure would greatly appreciated by all
Keep positive! We are all in this together
Thank you
Kim

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The BAF has something you can print out. https://view.joomag.com/recovery-guide-updated-2017-recovery-guide-2017/0495531001509041048

Here’s something from Joe Niekro Foundation https://www.joeniekrofoundation.com/patient-caregiver-support/recovery/

I like how the JNF goes through all the steps for us, but remember our family and loved ones are doing the same. Best to take a family member to your surgeon or neurologist and hopefully they can help set the family straight.

Best of luck